The needs, priorities, and future of long-term survivors

More than 50 advocates, researchers, and people living with HIV gathered March 30–31 at the Annenberg Center for Health Sciences in Rancho Mirage, California, to discuss the needs and priorities for survivors of HIV and their allies.

The Reunion Project (TRP) convened for the first time the National Roundtable Forum, a community-led, diverse coalition of HIV/AIDS survivor advocates from across the U.S. Over the course of one-and-one-half days long-term survivors of HIV/AIDS, community leaders, survivors who perinatally-acquired HIV, caregivers who are HIV-negative, and survivor expert opinion leaders took a deeper dive into the survivor psychosocial and community landscape in the U.S.

The goal of the Roundtable Forum was to “create a dialogue amongst a national sampling (representative) of individuals living with HIV and AIDS and the groups that advocate on their behalf to identify and prioritize the needs of long-term survivors; identify and prioritize key common issues, needs, strengths, resources and sources of resilience as well as the threats facing HIV long-term survivors that need to be addressed; and create a national framework to address high-priority, key needs for long-term survivors across multiple platforms (community, local, state, regional, national) and across multiple disciplines (policy, services, interventions, research).” Participants broke into smaller groups to answer key questions, and then reported back to the larger group for a facilitated discussion.

Key themes for survivors of HIV that emerged from the meeting included disparities in research, access and accessibility to programs, community building through networks and social groups, and advocacy around all of these issues, among others. Meeting participants agreed that defining what a long-term survivor is was less important and could even be self-defined, but “the reason why we come together is what matters.” As more than one participant pointed out, HIV is not the first or only thing they have had to survive, some have survived homelessness, multiple sexual violence, family rejection, financial instability—and often this was all before they became HIV-positive. So the word survivor can become “really loaded” for some individuals.

A Reunion Project one-day summit was held on Saturday concurrently with the second day of the Roundtable for local attendees from the Coachella Valley, and included educational sessions, research updates, and a town hall discussion on the results of the Roundtable, as well as results of local focus groups on the priorities of long-term survivors. It closed with an emotional and rousing keynote address by activist and author Cleve Jones, whose 2016 book When We Rise: My Life in the Movement, inspired the 2017 ABC-TV miniseries “When We Rise.”

The Reunion Project Roundtable Forum was made possible by support from Gilead Sciences, Bristol-Myers Squibb, Merck, Walgreens, TPAN, and Eisenhower Health, and hosted by HIV+Aging Research Project-PS (HARP-PS).